Open Post #2 - Advocacy

For this open post, I want to share something that I am passionate about so others have the chance to research it for themselves and possibly become involved in their own way. I will be giving a brief account of what it was like to donate stem cells through the National Marrow Donor Program available with Be The Match. My hopes are that some of you may get involved or pass along the information to others who may be able to help.

A little over two years ago, a friend of the family was diagnosed with an aggressive form of cancer. It isn’t my place to share any more details than they did manage to beat with the help of a donors through foundations like Be The Match. Feeling helpless when I found out, I realized that while there wasn’t much I could do to help our friend, I had the potential to help someone else one day. I am a steady blood donor and all registered to donate my organs someday but that somehow didn’t feel like enough, ya know?

So I signed up over at Be The Match. From the testimonials I heard from friends and online, it is very rare to get a call back. They send you a nifty little kit and all you do is swab the four quarters of your mouth, put it back in the envelope, and then send it back. From here on out, I have a paper trail of dates so I can include those to show just how fast the process is.

 

01.15.15 - A few weeks later, I get a phone call while packing the house to move: I was one of a dozen preliminary matches for someone and am I willing to undergo a few more tests to see if I match? Of course. Just name a time and place. So they set up an appointment for some blood work that fit my schedule that week and it ended up being just a few vials of blood drawn.

02.24.15 - Skipping ahead a few weeks, I received a call that said I as close to a perfect match than they could have hoped for. I would need to take 2-3 days off work, go through a day of testing up in Gainesville, and attend a phone conference so I was aware of the possible risks, side-effects, and so on. I agreed and they set me up with an appointment at Shands Hospital. They informed me that I would be doing a PBSC (Peripheral Blood Stem Cell) donation and sent me a rather large packet of information about everything.

03.02.15 – The whole day went by very slowly. The drive to Gainesville was long and I had to undergo a lot of tests. There was a bunch of blood drawn, physicals done by multiple physicians, and three separate psychological tests. The reason for the psychological tests were that some people can’t handle the stress of donating. When you go into it, all the information they give you about the person receiving your stem cells is an age, gender, and vague description of what is going on with them. In my case, it was “a woman who was between 60-75 who had an aggressive form of cancer.” The psychological testing comes in to play because not all donors can deal with the stress of knowing their donation may be the only option left and their recipient still may succumb to their ailment. 

03.08.15 – I get a call that I was cleared fully and that, unfortunately, my recipient had taken a turn for the worse. Her cancer was much more aggressive than they originally thought so they would have to move things along as quick as possible. During the phone call, I was told that our original plan of donating in Gainesville just wouldn’t do and I would have to go to the recipient. I vividly remember my Donor Specialist going “so… let’s say we needed you to fly out to Washington D.C. next week, would that be a possibility?” I told her that I would make it work even if it meant taking unpaid leave time from work. She immediately patched me over to the phone call that explained all the risks, possible side-effects, and everything else involved. It was overwhelming but anything to help someone in need.

 

03.14.15 – My daughter’s first birthday. It was equally amazing and horrible. In order to donate, you have to take a 5-day-long series of doses of a drug called Filgrastim which stimulates your white blood cell creation. Unfortunately, it has some horrible side-effects that, in my case, included horrible migraines, flu-like-symptoms, and back/joint pain that was way worse than I could have imagined and I have a high pain tolerance. My whole day was spent sitting on the couch, trying to be cordial to the guests, and hoping that my daughter wouldn’t ever look back at the pictures and think that I was horrible for not really being a part of her birthday party.

 

03.17.15 – The day of travel came very slowly with how bad I was feeling. Luckily, they don’t want you to have to travel alone so my wife came with. Both of our mothers offered to watch our children for the two days we would be gone. By the time I was getting ready to board my flight to Virginia, I wasn’t sure I was going to be able to sit on the plane that long due to the lower back/joint pains. I brought along The Gunslinger by Stephen King and begin another trip through the Dark Tower series as a way to occupy my mind. We arrived late that night and were lucky to have a friend who lived right near the hotel we were staying at. His wife was in her first year of being an E.R. doctor and she knew a lot about the donation process, so we spent the night hanging out with them, catching up and picking her brain about everything.

03.18.15 – We woke up very early and headed over to the clinic. They gave me one last dose of Filgrastim and hooked me up to the machine. I had to sit up in a hospital bed and understand that I wasn’t going to be able to move much for the next 4-6 hours. I had a large needle going into my right arm and an even larger needle going into my left arm. The process is that they take your blood through one needle, cycle it through the machine, and replace the blood (minus the stem cells) back into you through the other needle.  It was a long 5 hours but they provide you with movies to watch. My wife and I treated it like a weird kind of movie date. By the time I was done, the nurse checked the donation bag and was like “Daniel, how were your symptoms? Quite bad?” I told her they were bad but it was manageable, why?  “Well, we were shooting for about 300,000 for your donation number and you gave us over 1,500,000. The larger the donation, the more pain it usually has caused.” Luckily, this excess amount of pain came with another benefit: they gave me consent paperwork so they could freeze all of the extra stem cells in case my recipient needed more later on down the road. My wife even got to take a picture with my huge back of stem cells, which she found fascinating.

Being in pain, having spent most of the day donating, they told me to take it easy. So, being stubborn and knowing that my wife would love to explore a bit, I decided we were going to walk around Washington D.C. and take in the sights and museums for a few hours. It was painful and I felt terrible but it was quite an experience. It was also incredibly cold. So after about 7 hours of walking around the city, we headed to the hotel.

03.19.15  - We flew home very early in the morning. Once again, not fun with the pain. Once again, reading got me through it. We got home, spent the day with our kids, and slept a lot.

That brings me to today. It has been almost two years and I still have no idea what happened to my recipient. One of the things that you have to know going into it is that you aren’t guaranteed any knowledge of what happens. I signed all the paperwork saying that “I did want to know the outcome if the recipient allowed the information to be shared with me” but that doesn’t mean anything if the recipient, or their family, doesn’t fill out similar paperwork. She, or her family, have their reasons for not wanting to share the outcome. I take it as something I wasn’t supposed to know. My hopes are that it helped her, even if it was just a little bit.

The only other downfall to the whole process is that it has the possibility of coming with side-effects that could last “a few weeks or your whole life.” There is no way of telling when, or if, any of the side-effects will go away. For me, it has been back pain in the same location and feeling identical to how it hurt when I was taking the Filgrastim. The people with the Be The Match foundation keep close tabs so they have more results and research for further generations of donors but there isn’t anything they can do to solve the problem. I don’t let it sway me; if they called me today, I would drop everything to donate again. Not being able to sit comfortably for long periods of time due to back pain is not much of a problem when you consider the reason for it.

I know I didn’t pain the whole process in a very positive light. The fact is that it isn’t supposed to be a vacation, it is an attempt to help someone else. So if you have the ability to, please consider finding a way to help or pass on the information to someone else.

Be The Match

Open Post #1 - Quotes

Trying to come up with a post topic, I somehow ended up browsing for new books to read over on GoodReads. All readers understand this shirking of responsibility in order to find the next story they are going to dive into. While I was there, I happened upon the quotes section of a book and decided to make my post about my favorite literary quotes. There are times when authors can express an idea or feeling so well that I wouldn't try to create my own version. Also, so it doesn’t just come off as a list with no real meaning, I thought I could include a little excerpt about what the quote means to me.

“And will I tell you that these three lived happily ever after? I will not, for no one ever does. But there was happiness. And they did live.”
― Stephen King, The Dark Tower

When my wife was near the end of her third trimester with our first child, I was reading through the Dark Tower series again. I vividly remember sitting there, getting to this line, and looking over at my very pregnant wife who was napping on the couch. Something about the way she looked coupled with the crazy amount of emotions that are involved with getting ready to bring a child into the world had me feeling reflective. I told myself that I wasn’t going to be one of those parents who were going to plan every aspect of every moment or get upset over inane things like stained rugs and drawn-on walls. There is no way to plan a “happily ever after” but I will always strive to make sure we are at least finding as much happiness as possible.

“I stopped believing there was a power of good and a power of evil that were outside us. And I came to believe that good and evil are names for what people do, not for what they are.”
― Philip Pullman, The Amber Spyglass

My beliefs aren’t ones that I speak about openly. Unless the person listening has a genuine interest in the topic. Too many arguments, too many hurt feelings, and way too many people get angry when you share an idea or belief that doesn’t align with theirs. This quote, however, sums up my belief on the whole “good and evil” idea. We all have the ability to do horrible things and do helpful things; it is up to each of us to choose which one is most fulfilling to ourselves.

“It’s so f***ing cheap when people say I love you. It’s a name to stick on a surge of hormones, with a little hint of loyalty thrown in. I’ve never liked saying it. Here’s what I say: We’re together, now and until the end. You have everything I need to be happy. You make me feel right.”
― Joe Hill, The Fireman
                                                                        

Knowing that you want to be with someone until you are both too old and senile to remember one another sounds like something you would hear in a Ryan Gosling movie. The words “I love you” aren’t things that are grand and amazing anymore. I love my kids. I love my friends. I love books. I love Netflix. Love is just another word to use when you are fond of something. Reading this quote, I immediately copied it down and sent it to my wife. It sums up our relationship far better than any amount of “I love yous” ever will.

“It takes a great deal of bravery to stand up to our enemies, but just as much to stand up to our friends.”
― J.K. Rowling, Harry Potter and the Sorcerer's Stone

What good would a list of quotes be without some Harry Potter thrown in? I have a hard time picking one single quote but this one sums up a part of my life that was very beneficial. Growing up with very… let’s say “opinionated” family members and ending up with a group of friends that you aren’t the best types of people can be rough. My wife and I have cut out huge portions of our friendships and interaction with family members due to this and whenever I am feeling like maybe I should just go back to being friendly with people who did nothing but bad for my life, I like to use this quote as a way to put myself back into my right mind.

“I'd far rather be happy than right any day.”
― Douglas Adams, The Hitchhiker's Guide to the Galaxy

Pretty self-explanatory for anyone who is in a relationship of any sorts. There are so many times where you just want to argue your point but is it worth it? If it is, go for it. If possibly ruining a friendship or relationship over some unimportant conversation means the world to you, you should do it. I am constantly weighing my options and choosing to be happy instead of getting into a fight about where the ending of Lost made sense or not.

“Don't ask for guarantees. And don't look to be saved in any one thing, person, machine, or library. Do your own bit of saving, and if you drown, at least die knowing you were heading for shore.”
― Ray Bradbury, Fahrenheit 451

Finding a decent job, right out of high school, was both helpful and a hindrance. It was easy to just fall into basics of a job that wasn’t too demanding, paid alright, and provided outstanding benefits. This was the type of guarantee that was making me miserable. With no chance of advancement and nothing challenging me, the job grew stagnant and it was starting to show in my life outside of work. Teaching was always that “saving” I wanted to do and I finally reached a point where I realized that pursuing my desire to become a teacher, no matter the outcome, was something I simply had to go for.